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Decreasing support and how to find more support.

When I was in the hospital for the first time i was surprised and impressed by the number of calls, cards, visits when possible, phone calls and emails offering supportive encouragement to me and my family. Once my survival was more probable the contacts seemed to decrease some. They decreased further when I went to rehab hospital and later a nursing home for more rehab work and even more after I went back home. This sort of puzzled me since the most visits and support seemed to come when i was often too sick to really communicate much. As I got better and more able to actually visit with people I had less opportunities to do so. I could certainly do more things when in a nursing home than when I was in ICU units but the Wegs caused major life changes in social relationships that persist.

The damage from Wegs has hindered or limited my ability to stay involved in most of the groups, and activities I enjoyed before the illness. Loss of hearing, limited energy, limited walking are real physical limitations. Emotional variability and mood swings from pred meds, and busy medical appointment schedule created another social barrier. The increased financial costs from increased medical needs also did major damage to my finances and created another major obstacle to what I could do.

Now I have regained some hearing from BAHA type surgery I might be able to participate more in some social activities but still have the other limitations. Friendships based upon a shared interest seem to wane or disappear when one can't participate in the activity anymore.

Sometimes our family and friends don't seem able to adjust to our new level of functioning and new "normal" very well either. They may be unsupportive or rather critical if they can't understand our illness or accept our limitations. I know divorce and other family disruption can happen in these circumstances which only creates more stress for us.

How many people are lucky enough to have a good face to face group? How many people find internet friends to be their main source or support?

I think retirement brings about changes in our social networks. We don't see the people we used to work with as often. In early retirement, we find that some of our friends are still working, and thus have less time available for us. I also think that hospitalization heightens concern for well-being. This concern wanes a bit once we are discharged and life returns to our "new normal".

Having said the above, we sometimes need to look at ourselves to see if we're doing our part to nurture relationships. I know this can be difficult if symptoms continue to be debilitating or interfere with communications.

Don't know if this is useful to you or not. I hope you find ways to re-establish old relationships and begin new ones.

Pete
dx 1/11

"Every day is a good day. Some are better than others." - unknown

"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

I would have to say that the friends here on the forum definitely provide the most support. Out there in the world, I "don't look sick" and I do get the polite questions about how I'm doing, but that's about it. But then, I don't solicit the support, because I don't look sick, and they wouldn't understand. I ran across a face to face support group that supposedly meets once in awhile for picnics and such, but found them hard to communicate with online, and they are based an hour and a half away from me. I didn't have the time or energy to pursue it. This forum is really the best and most convenient base of support I can imagine.

I guess because I'm still working it's a lot easier for me.
I have a great group of people that I work with and I am also the Treasurer for a Tenpin Bowling League, so have a great group of people there too....can't bowl anymore though.
I recenty joined a book club and we meet once a month to have dinner and talk about our chosen book for the month.
- just some little things to get me out of the house and off the computer otherwise I would be hassling you lovely people all day, everyday, or playing games on facebook.
- but still, most of these people don't fully understand ....... and it is because we do look so normal.

Yes, this forum is the best

Keep Smiling
Michelle

Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

It's true that selling at the Farmers Market 4 days a week provides me with about all the face-to-face social contact I need. But it would be nice to also have time for book clubs, walking groups, or other such activities. I realize the kind of support we need includes not just people trying to understand what we are going through with our illness, but people helping us realize that we can still do a lot of interesting, fun, and meaningful things with other people. And everyone has problems or illnesses in their lives, so we can be there to support them, too.

I think the key to feeling involved is engaging in activities that 1) take your mind off of being sick and 2) focus on helping others whenever possible.

Even though it's not meeting face-to-face, being on Twitter helps me spend time interacting with a wide variety of people and thinking about all sorts of topics. It's very mentally-stimulating, because someone will tweet a link to an article and that gets you thinking and discussing it. Then someone else tweets about their new puppy and it's another conversation. For someone like me, who can usually only leave the house 3 or maybe 4 times a week, it's great. I rarely discuss Wegs or being sick on Twitter or FB.

I also spend a lot of time helping others. I do some online things for our temple, like making flyers or organizing groups, etc.... I can adapt it to my energy levels and hit the Pause button for the hours, days, weeks or months when I'm not able to do it. I spend a lot of time in prayer and meditation as well. Also reading, and of course taking care of my animals.

There are so many ways we can help others even if we can't walk or have other physical limitations. Animal rescuers (individuals or organizations) post pictures of dogs and cats that need to be rescued and/or fostered. It's non-stop. You can be a HUGE help to them by sharing the posts, or better yet, helping to find them homes. I've worked in animal rescue and can give people more info about ways to help. Local food banks can also use your help calling grocery stores to ask for unused but safe food. There are so many more things like this!

Before I got Wegs all of my fun revolved around physical activities, like hiking, biking, yoga, etc.... Now that those are off the table, I've found other ways to enjoy myself that I never did before.

I feel bad for those of us who cannot engage in physical activities, and it reminds me that I can and should more often. I might get out of breath a little faster than before. But that's nothing compared to not being able to do it at all. (However, I do get a fair bit of exercise doing pottery, selling at the Market, and traipsing around after my cats.)

There are so many ways we can help others even if we can't walk or have other physical limitations. Animal rescuers (individuals or organizations) post pictures of dogs and cats that need to be rescued and/or fostered. It's non-stop. You can be a HUGE help to them by sharing the posts, or better yet, helping to find them homes. I've worked in animal rescue and can give people more info about ways to help. Local food banks can also use your help calling grocery stores to ask for unused but safe food. There are so many more things like this!

This is great. I think most of us on here like animals. I feed some feral cats who have been trapped, neutered and returned to their outdoor home, since they are too wild to be adopted. The organization that did the TNR also finds homes for adoptable cats and coordinates foster care for kittens. I think fostering kittens and puppies would be a great thing for largely housebound Weggies without requiring the responsibility of giving them a permanent home. These animal welfare organizations can use all the help they can get.

Procuring food for food banks and otherwise coordinating help for down and out people is also a great idea.

I know what you mean drz. I think that on some level the loss of the active concern is probably normal. WHen we first get diagnosed and look like we are dieing I think people get rattled into paying attention. But then as we get "better" people lose some of the interest in following our status. That and there is probably some fatigue over time that just wears out some people who probably weren't your strongest support.

I'm lucky to still be at work so I keep pretty connected with people. But I definitely see that, other than my coworker with Lupus, most of my team mates don't get it at all.

I believe what Bob suggests is really what happens, but it's a little deeper than that also. My closest friends, ones who supported me thru last year and still, are still within reach and in contact. I kind of expected that, but thought of some 'disappearing' over time. That includes the same kind of feelings I had when I retired...BUT, there are social and not so social people...those who are social expect, demand, and work at keeping up the activities (I'm lucky, I can still golf, but I'd be playing cards or something if I coudn't do that). Those of 'us' who still work, don't have to work as hard at social and physical activities as those are ever present and, frankly, just as big a pain as not being active cuz they drain one so much. I would imagine and have heard from others on here that they wish they had more down time. I am a social moderate, love people just understand that we are what we are...and I accept that...I do not accept the 'solitude' of this disease or any other...I was the worst patient! Believe me, I wanted out, I wanted to walk, I wanted my friends there...even tho I was incoherent and would fall flat on my face the first step! Ha! I watched my mother literally kill herself by holing up in her abode after Pop died...her heart finally calcified basically...hmmmm, a calcified life I may observe. Not going that way...will strive for 'touch' for as long as I can...it helps people a lot to make their own way that way...what??!?!??! LOL!

Knowing how to think empowers you far beyond those who only know what to think. -NdT